4 eyes

Up and down…up and down.

she gets tired of me taking pics
she gets tired of me taking pics

Thats our everyday. This morning was a rougher one again. Radiation should be very quick. Today took 1.5 hours for Jennifer. Breathing difficulty again. Because she has already been cancelled so much and we are so close to the end they kept at.

Going into recovery today she was still asleep. When I got in to see her she had dried blood around her nose and mouth. This was new. And scary. They had to be aggressive today to help her breathe.

And when she woke up she was thrown off…being under so long and me being there I think both can negatively impact her mood. But it also makes her need me so much. She grabs me and pulls me to lay on top her. Like seriously full weight of my face and upper body on her. Its actually very sweet…like I am her full sized lovey.

Then we headed up for her weekly neruo oncology appointment…It was decided that even though we thought there was no problem its worth doing a chest x-ray to be sure. Finally by the end of the appointment she

JLK and dr Partap at the holiday party
JLK and dr Partap at the holiday party

was in a good mood again. We talked about what our lives will look like when radiation is done…appointments etc…JLK said she didn’t want to go once a week to see them…But she was just being combative…the truth is she enjoys seeing them.

We did the x-ray then had Emily and her mom over to our place and the park for a play date. It was great…for both of us. It was nice just to talk and vent with somebody who really gets it. And for Jennifer to just get to play with somebody who also just really just gets it…even if the girls don’t have the same need to talk about it all. We are hoping to see each other again tomorrow.

The girls also both had gifts…for each other…from other people in their lives. Pretty amazing how this budding friendship is having a ripple effect and the people that care for my daughter are now invested in this other “cancer princess”. Tony and I talked today…about how I genuinely like Emily’s mom and would choose to hang out with her…that I am IMG_3089bummed she lives in another state. So he said we should stay in contact…and I realized how much I want to. I am invested in this little girl. I want to watch her live and grow and accomplish….Even more than want I think I need it.

After bedtime tonight I noticed a e-mail from her dr. Crap. I read it and found our Jennifer has aspiration pneumonia. She will go on antibiotics and will still try to do radiation tomorrow. Other than her safety my biggest questions were is this potential tumor re-growth. They don’t think it is since she doesn’t yet show difficulty swallowing. And is she in pain? They don’t think so.

But in the amazingly short time between reading the email and getting responses and then a call from her dr those worries were swirling. Its so hard to be worried that its growing still…that my Jennifer is in the minority that radiation isn’t helping….that we have spent these 7 weeks wasted….

We have had great times together though….bonding and talking. IMG_2604

But I am so scared we made the wrong choice by pursuing this treatment option. Some parents don’t do it. Some just take their children home and spend the time. Of course thats still our plan to spend that time…so if we could add to it…how could we not…

But what if we were wrong?

She is asking to read. She was so close before her vision went haywire. I told her we could get her a tutor but she wants to go to school. She wanted to learn with other kids. So we talked and gave her 2 options. One is going back to her school 2 days a week and I can pick her up at lunch. Or going back to her old school. (preschool). She quickly opted for Ms Sandys class. I was relieved. I didn’t want her back at her school…too big and too many kids. So many chances for things to be said to her I don’t want her to be hearing.

Honestly the thought of dropping her off and driving away is difficult…but the thought of her being unhappy is even worse. So we will send her 2 days a week. And hopefully get her some tutoring at our house to kick start her reading.

Her excitement to learn to read has made her really want to improve her IMG_3093vision. Only one way to do that though…patching. She has had zero interest in that. I told her we could talk today with the drs about other options. We came up with the idea of clear glasses and blacking out over one eye. She is Jennifer so we made it a little cuter…but she is so happy with them! Hopefully she wears them and life is a bit easier seeing out of only one eye…

IMG_3103

 

I simply and purely love this girl.

6 Responses to “4 eyes”

  1. Hi Libby,
    I don’t know if you read these comments, but if you want to teach JLK to read, I used BOB books with Ciaran and they worked a treat. You can often get sets at costco

    Love
    Elly

  2. Hi Libby-
    We don’t know each other but we have friends in common. I wanted to reach out and let you know I have walked in your shoes, cried in those hallways at LPCH and worried myself sick as my son Connor battled this awful tumor. The radiation was so hard but it was even harder when it ended. We, too, always wondered if we made the right choices but all you can do is know you have done the very best with the available options. We live in San Jose and I am happy to talk anytime (my email is mariam_johnson2002@yahoo.com and I think someone may have passed along my cell number). There is a wonderful parent community of DIPG parents that offer help when you have questions or concerns (medical or otherwise), you can subscribe to DIPG.net and ask away. I cannot offer anything more than to let you know I truly understand.

    With hope for a miracle for Jennifer,
    Mariam Johnson

  3. What an amazing little girl! I know it can be hard not to second guess decisions that are this important but remember that if you chose to not peruse treatment there would be doubts and worries with that: “what if it had worked?” etc. You are fighters and you chose to fight. You made the decision that is true to yourselves and thus the right decision. I am so full of admiration for you and your family every step of this journey.

  4. My daughter Sabrina is in the same class as Heather’s daughter, Lilly and met all of you at her birthday party. I am a teacher of small people and would be happy to offer my services to teach Jennifer to read after school.

    Much love

    Cindy

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